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Privacy Policy 

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Inflammatory Neuropathies UK customer privacy notice 

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This privacy notice tells you what to expect us to do with your personal information. 

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  • Contact details 

  • What information we collect, use, and why 

  • Lawful bases and data protection rights 

  • Where we get personal information from 

  • How long we keep information 

  • Who we share information with 

  • Sharing information outside the UK 

  • How to complain 

 

 Contact details 

 

Post â€‹

Inflammatory Neuropathies UK,

Glennys Sanders House,

Pride Parkway,

Enterprise Park,

Sleaford,

Lincolnshire,

NG34 8GL, GB 

 

Telephone 

01529 469 910 

 

Email 

hello@inflammatoryneuropathies.uk 

 

 What information we collect, use, and why 

 

We collect or use the following information to provide services and goods, including delivery and third party referrals: 

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  • Names and contact details 

  • Gender 

  • Addresses 

  • Date of birth 

  • Photographs or video recordings 

  • Call recordings (where permission is granted) 

  • Service use history 

  • Health information (including medical conditions related to Inflammatory Neuropathies, medical requirements and history) 

  • Information about care needs (including disabilities, home conditions, dietary requirements and general care provisions) 

  • Information about work, home and living conditions  

  • Information about support requirements 

  • Information about income and financial needs for funding or personal budget support (i.e Personal Grants) 

  • Payment details (including card or bank information for transfers and direct debits) 

  • Website user information (including user journeys and cookie tracking) 

 

We also collect or use the following special category information to provide services and goods, including delivery and third party referrals. This information is subject to additional protection due to its sensitive nature: 

 

  • Health information 

 

We collect or use the following information to receive donations or funding and organise fundraising activities: 

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  • Names and contact details 

  • Addresses 

  • Payment or banking details 

  • Donation history 

  • Health information 

  • Tax payer information (for Gift Aid purposes) 

  • Gifts in wills 

  • Visitors to our stores and website 

 

We also collect or use the following special category information to receive donations or funding and organise fundraising activities. This information is subject to additional protection due to its sensitive nature: 

 

  • Health information 

 

We collect or use the following personal information for service updates or marketing purposes: 

 

  • Names and contact details 

  • Addresses 

  • Marketing preferences 

  • Recorded images, such as photos or videos 

  • Call recordings 

  • Donation history 

  • Website and app user journey information 

  • Records of consent, where appropriate 

 

We also collect or use the following special category information for service updates or marketing purposes. This information is subject to additional protection due to its sensitive nature: 

 

  • Health information 

 

 Lawful bases and data protection rights 

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Under UK data protection law, we must have a “lawful basis” for collecting and using your personal information. There is a list of possible lawful bases in the UK GDPR. You can find out more about lawful bases on the ICO’s website. 

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Which lawful basis we rely on may affect your data protection rights which are set out in brief below. You can find out more about your data protection rights and the exemptions which may apply on the ICO’s website: 

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  • Your right of access - You have the right to ask us for copies of your personal information. You can request other information such as details about where we get personal information from and who we share personal information with. There are some exemptions which means you may not receive all the information you ask for. Read more about the right of access. 

If you make a request, we must respond to you without undue delay and in any event within one month. 

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To make a data protection rights request, please contact us using the contact details at the top of this privacy notice. 

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 Our lawful bases for the collection and use of your data 

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Our lawful bases for collecting or using personal information to provide services and goods, including delivery and third party referrals are: 

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  • Consent - we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time. 

  • Legal obligation – we have to collect or use your information so we can comply with the law. All of your data protection rights may apply, except the right to erasure, the right to object and the right to data portability. 

  • Legitimate interests – we’re collecting or using your information because it benefits you, our organisation or someone else, without causing an undue risk of harm to anyone. All of your data protection rights may apply, except the right to portability. Our legitimate interests are: 

  • By understanding how you interact with our services, we know what we need to pay more attention, add budget, or promote better.  
     

For more information on our use of legitimate interests as a lawful basis you can contact us using the contact details set out above. 

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Our lawful bases for collecting or using personal information to receive donations or funding and organise fundraising activities are: 

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  • Consent - we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time. 

  • Contract – we have to collect or use the information so we can enter into or carry out a contract with you. All of your data protection rights may apply except the right to object. 

  • Legal obligation – we have to collect or use your information so we can comply with the law. All of your data protection rights may apply, except the right to erasure, the right to object and the right to data portability. 

  • Legitimate interests – we’re collecting or using your information because it benefits you, our organisation or someone else, without causing an undue risk of harm to anyone. All of your data protection rights may apply, except the right to portability. Our legitimate interests are: 

  • Knowing your preferences for donations or types of fundraising events helps us to know where to invest funds - do we need to buy spaces in specific events? Or do we need to offer an easier/more accessible option.  
     

For more information on our use of legitimate interests as a lawful basis you can contact us using the contact details set out above. 

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Our lawful bases for collecting or using personal information for service updates or marketing purposes are: 

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  • Consent - we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time. 

  • Contract – we have to collect or use the information so we can enter into or carry out a contract with you. All of your data protection rights may apply except the right to object. 

  • Legal obligation – we have to collect or use your information so we can comply with the law. All of your data protection rights may apply, except the right to erasure, the right to object and the right to data portability. 

  • Legitimate interests – we’re collecting or using your information because it benefits you, our organisation or someone else, without causing an undue risk of harm to anyone. All of your data protection rights may apply, except the right to portability. Our legitimate interests are: 

  • By understanding how you interact with our website, it helps us learn what is most important to our visitors. This in turn allows us to create a more streamlined experience for visitors. This also benefits the charity as a cleaner website leads to better retention.  
     

For more information on our use of legitimate interests as a lawful basis you can contact us using the contact details set out above. 

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Our lawful bases for collecting or using personal information to comply with legal requirements are: 

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  • Consent - we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time. 

  • Contract – we have to collect or use the information so we can enter into or carry out a contract with you. All of your data protection rights may apply except the right to object. 

  • Legal obligation – we have to collect or use your information so we can comply with the law. All of your data protection rights may apply, except the right to erasure, the right to object and the right to data portability. 
     

Where we get personal information from 

  • Directly from you 

  • Family members or carers 

  • Charities or voluntary sector organisations 

  • Publicly available sources 
     

 How long we keep information 

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We review our retention periods for personal information on a regular basis. We are legally required to hold some types of information to fulfil our statutory obligations (for example the collection of Gift Aid). We will hold your personal information on our systems for as long as is necessary for the relevant activity, or as long as is set out in any relevant contract you hold with us. 
 

 Who we share information with 
 

Data processors 

Beacon 

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This data processor does the following activities for us: They host our user details - though do not have access to those details and are primarily a CRM. 

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Others we share personal information with 

  • Care providers (if you request we contact Rareminds directly on your behalf)

  • Professional advisors 

  • Relevant regulatory authorities 

  • Publicly on our website, social media or other marketing and information media 
     

 Sharing information outside of the UK 

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Where necessary, we will transfer personal information outside of the UK. When doing so, we comply with the UK GDPR, making sure appropriate safeguards are in place. 

For further information or to obtain a copy of the appropriate safeguard for any of the transfers below, please contact us using the contact information provided above. 

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Organisation name: Google Analytics 

Category of recipient: Marketing 

Country the personal information is sent to: Google Web Servers - may be based in UK, EU, or US 

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We may also gather anonymised survey data to share with sister organisations, however you will be advised on this when given a survey to fill in. 

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If you have any concerns about our use of your personal data, you can make a complaint to us using the contact details at the top of this privacy notice. 

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If you remain unhappy with how we’ve used your data after raising a complaint with us, you can also complain to the ICO. 

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The ICO’s address:            

Information Commissioner’s Office 
Wycliffe House 
Water Lane 
Wilmslow 
Cheshire 
SK9 5AF 

Helpline number: 0303 123 1113 

Website: https://www.ico.org.uk/make-a-complaint 

Last updated 

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